Taking steps to improve my well-being as a Dravet syndrome parent

Last Monday, we skipped soccer practice for Austen, my 7-year-old daughter with Dravet syndrome. Soccer is a regular part of her routine.

No one was sick, and the weather was nice. But I was exhausted, and all I wanted to do was get home, put away two loads of laundry that were waiting for me, and rest in my bed. Years ago, I would have told myself that this was wrong and selfish. As a mom, I have to make sure to keep these commitments. But that day, I just didn’t care.

When Austen was born, I already had two other children. I was used to putting my own needs and wants on the back burner to give my children the attention and devotion they needed from me. Although Austen wasn’t a planned pregnancy, I didn’t feel like my life would change much by adding a third baby into the mix.

Boy, was I wrong.

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Even before her seizures began when she was 5 months old, Austen was not a very happy baby. She cried constantly, and even more whenever her dad held her. I remember begging my cousin to come over and hold her just so I could take a shower. If I sat her down at all, she would start screaming.

When she started having seizures, my already full plate started to overflow. I was so worried that her siblings would resent her for the extra attention she needed that I poured even more of myself out to them. Every waking moment was devoted to my children, and I got lost in the fold.

The breaking point

This cycle continued for several years until I hit a breaking point in 2018. I’m not even sure what happened that day, but I know it ended with my then husband coming home to me sitting on the living room floor, bawling my eyes out, Austen on one knee, her brother on the other. I’m sure the house was a mess around me, and it must have looked like pure chaos. But that day I decided I needed to find myself again. I needed to figure out who I am apart from my children and my identity as a Dravet syndrome parent.

The first thing I did was go to therapy, which I’d been meaning to do since Austen was diagnosed. My therapist was amazing and helped me realize that I will always have stress in my life. There is no way to eliminate all of it, but what I could do is start to care for myself and learn coping mechanisms to deal with it as it appears. That way, it wouldn’t bottle up like it had been doing.

My therapist also did something no one else had done before: He gave me permission to be selfish. While he acknowledged that it was my job to be a good mom to my kids, he clarified that I can’t do that unless I am whole myself. You can’t pour from an empty cup, and that was exactly what I had been trying to do.

So I started to take care of myself more. Sometimes that meant waking up a little earlier so I could drink a cup of coffee in silence. Other times it meant allowing others to assume responsibility for some of Austen’s care. And, like last Monday, sometimes it meant a last-minute cancellation of plans without allowing myself to feel guilty.

Does it make me a perfect mom? No, but it does make me a better one in the long run. And that is what my children need most of all.

Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.

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